December 30, 2005. That’s the day our daughter Penny was born. She was diagnosed with Down syndrome a few hours later. World Down Syndrome Day is coming up on March 21, and as I think back to 2005, it’s almost hard to remember what it felt like to hold Penny as a new baby.
Now Penny is in a position to talk to new moms who have a baby with Down syndrome, and the first thing she always says is, “Don’t be afraid.” Penny has helped me believe that when we surrender to love and give love space to grow, it will overpower and overturn fear. Fear shrivels us up into ourselves. Love expands us.
Growing up with a child with Down syndrome
I’ve written tens of thousands of words about our experience as parents of a child with Down syndrome over the years, and I recently combined two of my e-books into a PAPERBACK book called Missing Out on Beautiful: Growing Up With a Child With Down Syndrome.
These essays reflect our family’s experiences while Penny was a baby, a child growing up, and a student in middle school. You’ll hear from me but also from Penny and from her siblings about the challenges and gifts of our life together. I love Penny’s thoughts on why independence is important to her!
Independence is important to me and this is why.
-In Her Own Words: Penny on Independence and Self-Advocacy
What strikes me as I look at these essays and reflections side by side is how much we’ve moved from the realm of our personal space and into the public space. This collection of thoughts speaks to the significance of community—dance teachers, schoolteachers, churches, friends, and even acquaintances—who help to create a space not just of inclusion but of belonging for Penny and for our family.
That’s my hope, for Penny and for all the kids and adults who have been pushed to the margins of our society—that we would learn to become interdependent communities that welcome the beauty and gifts we have to offer one another, communities where everyone belongs.
To read more with Amy Julia about growing up with a child with Down syndrome:
- Book: A Good and Perfect Gift
- Happy 15th Birthday, Penny!
- Continuing the Conversation: Penny and Black Lives Matter
- Every Kid Deserves a Community of Support
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